September 13, 2015. While Stan, Mom, and I were eating breakfast, we spoke about Dad, our anxiety about his medical coverage and how to make the best use of his remaining coverage. We made a list of questions and requests that we wanted to address with the doctor today:
- As long as one of us was in the room with him, we would loosen his restraints.
- As long as we were signing all the consent forms, he didn’t get to decline physical therapy any more than he could decline antibiotics or any other treatment.
- We wanted him in some sort of chair every day, for as many hours as possible.
As a follow-up, I wanted to know if any of the providers was concerned about Dad’s rising WBC count.
Mom and I arrived at the CCH around 9:00 A.M. Dad was still sleeping, but some of the lights were on in his room and once again he was restrained and his call button was out of his reach. I held his hand for a few minutes while he slept. I wanted him to wake up, so I found a cloth, soaked it in warm water, and placed it over his eyes, which did the trick. After he woke up, we chatted about typical morning topics, like the weather. He was a bit disoriented about where he was for a couple of minutes, but we finally got into the groove and talked about the flowers in my parents’ courtyard at home.
He told John, his nurse, about their Angel Trumpet plant and how he and my mother first saw its flowers when they returned from a trip. Dad started in the middle of the story and I’m sure that John didn’t understand all of what Dad said, but I knew what he was talking about. I wondered how many conversations like this one were considered nonsensical.
John told us that Dad’s blood pressure had dipped a couple of times last night. At the first occurrence, they administered Lopressor, but the second time, they were able to remedy the situation with a bolus push of saline. I don’t know if it made any difference medically, but I always preferred the saline bolus over vasopressors. In simple terms, the saline bolus adds more fluid to the blood, which increases the pressure. It’s probably not an ideal situation for dialysis patients, but I had never heard anyone mention that as a concern or a risk.
Dr. Brito, the attending physician, stopped by and spent a long time charting on the terminal in Dad’s room. She could tell from our conversation that Dad was lucid and engaged. I told her that I had asked John this morning if he would loosen the restraints while we were in the room. After listening to our conversation and knowing that Dad’s nasal feeding tube was gone, she said that they would discuss removing the restraints during rounds.
Stan arrived around 10:00 A.M., and Mom and I left for church about 15 minutes later. When we saw Stan after church, he said that he and Dad had had a nice visit and that John had removed Dad’s restraints around 11:30 A.M. Dad’s blood pressure dropped some while Stan was there, but he said that they planned to monitor him and had not started any medication—namely vasopressors.
When Mom and I returned to the CCH after lunch, Dad was dozing, but he woke easily. We chatted some more about hospital rules and about how he had to stay in bed unless supervised by hospital personnel. Before our conversation was over, he fell asleep and snoozed for about 30 minutes. John stopped by, and when we asked him about the possibility of getting Dad out of bed, he said that he would be glad to put Dad in the Stryker chair later in the day if we were there. Dad spent an hour or so in the chair and was in good spirits for the rest of the day.
Mom and I returned home without having an opportunity to share our demands with the doctor.
September 14. It was Monday and Dr. Ciceri was this week’s attending physician. I had never met him, but Mom knew him from Dad’s first stay at the CCH in June. Dad had dialysis this morning, so I worked from my parents’ home until lunchtime. Mom arrived at the CCH at 12:40 P.M., and I joined her 30 minutes later. We learned that Dad had had a rough time during dialysis today. About an hour into his session, his blood pressure dropped. In addition to the Midodrine that Suzanne, his dialysis nurse, had administered prior to starting his session, she also administered Albumin via an IV during the entire session. Shortly thereafter, he had experienced tachycardia and required Levophed. When his situation still hadn’t improved, Suzanne contacted the nephrology fellow and he had her end the session 40 minutes early. Dad looked pretty lethargic when he was returned to his room. When I asked about the results of his morning lab work, I noted that for the first time since August 19, his WBC count was elevated out of the normal range.
I wanted to speak with the nephrologist to see if there was any way in which to make dialysis sessions more tolerable for Dad. I asked Michelle, Dad’s nurse, to see if Dr. Concepcion, the nephrologist, was still in the building. She called the dialysis lab and learned that he and his fellow had left the building earlier this morning. At 1:45 P.M., she paged Dr. Ciceri for us and told us that he would stop by to see us later.
At 1:55 P.M., Marty and Dr. Ciceri stopped by to talk about Dad’s current status and our request to have him transferred to the VA hospital. After Marty had confirmed Dad’s eligibility to receive VA medical benefits, Dr. Ciceri spoke to someone in the admissions office at the VA hospital. Because Dad had received a vasopressor during dialysis today, he wasn’t considered stable enough to transfer. He needed to be off of vasopressors for at least 24 hours. The doctor said that he would reevaluate Dad’s condition tomorrow.
Because of Dad’s low blood pressure, his physical therapy session was canceled. Dad was very lethargic during most of the day. At 2:15 P.M., Brenda, a tech, administered a bedside EKG. Dad perked up somewhat during the late afternoon and seemed to be in good spirits.
Mom’s friend, Marilyn stopped by with some books. She and Mom visited briefly in the CCH lobby, and Mom went home shortly after Marilyn left.
September 15. Mom arrived at the CCH at 8:40 A.M., just as Dad was just waking up. He seemed much different from the lethargic and ill-looking person he had been the previous day. He had been awake for only a few minutes when Jennifer arrived for his physical therapy session. He told her that he was feeling good and that he had no complaints. She had him stand and to pivot and sit and stand from the edge of the bed. At the end of the session, she was able to situate him in the Stryker cardiac chair. Jennifer was pleased with his attitude and his progress, and so was Mom. Jennifer finished her session with Dad at 9:20 A.M., and he remained in the chair until 2:00 P.M.
Every morning, the doctor, nurses, or both, performed a short assessment of Dad’s mental status. From the third week after he entered the Scott & White system, he had been unable to tell the medical providers the name of the president of the United States. Although there might have been a few days in which he couldn’t remember, I suspect that most of the time he was being stubborn. He wasn’t a fan of President Obama and forgetting his name was a personal protest of Dad’s. I sometimes wondered if his refusal to acknowledge the president affected the assessment of his mental status.
Dr. Ciceri stopped by and told Mom that he had ordered several tests. He also shared the good news that Dad was now off the vasopressors.
Dad had been complaining about an echo in his hearing aids, so Mom took his hearing aids to be repaired. Before she left, she and Dad had a crazy discussion about the location of the audiologist. His delirium turned their conversation into a no-win situation for Mom, and she eventually left to complete her errand.
Mom contacted Gina, her hairdresser, to see if she would come to the CCH and give Dad a haircut. His hair had become long and scraggly, and Mom couldn’t stand it. When she told Dad, he objected, saying that he would wait until he could see his barber. Mom went to the nurses’ station to borrow a hand mirror. All it took was one glance at himself in the mirror and the discussion was over. Gina would stop by next Thursday, nine days from now.
Dad hadn’t been very successful at suctioning himself today. Shortly before Mom left for the day, she noticed that the sound of the suction machine seemed different. At the time, several nursing students were working at the CCH. Mom latched onto one and had him look at the machine. The young nursing student was able to fix the problem, and Mom thanked him profusely, calling him a techie. After the nursing student left, Dad was much more successful at clearing his own secretions.
September 16. Dad was feeling pretty good again this morning, and coincidently, his WBC count was on a downward trajectory. He had now been off of Levophed for over 24 hours. The nephrologist had planned to remove a lot less fluid than usual, so it seemed that the day was getting off to a great start. Dad required Midodrine a couple of times during his dialysis, but he tolerated the session fairly well.
When Mom learned that Dad had been off of the vasopressors for 24 hours, she asked Marty when he would transfer to the VA hospital. Marty told her that she would send the updated information to the VA hospital but the VA hospital would make the transfer arrangements. She would let Mom know more about his transfer as soon as she knew.
Now that the transfer seemed like a done deal, Mom told Dad. They had a somewhat strange conversation because of Dad’s confusion about where he was and where he would be going.
During Dad’s physical therapy session with Jennifer, he told her that he had a bit of an upset stomach, but other than that, he had no other complaints. Although he became somewhat fatigued near the end of their session, she was able to get him to complete several exercises. When they were finished, she helped him into the Stryker cardiac chair, and left him with Mom.
Mom had an afternoon appointment with Dr. Ebert, her cardiologist. The doctor wanted Mom to start taking blood thinners again. Mom had been taking Xarelto when she had her stroke in May. During her hospitalization, Dr. White, her attending physician, told her to stop taking it for at least three weeks, and the neurologist had recommended that she stop taking anticoagulants altogether. Dr. Ebert now wanted to prescribe Eliquis, a different anticoagulant. The thought of her taking blood thinners again concerned me, but Dr. Ebert had been pretty cool and honest with me when I met her in May. I had to trust some doctor, but it seemed as if the specialists focused on single organs and not the whole person.
Shortly before Mom left the CCH for the day, Adan dropped by Dad’s room and gave Mom the name of the speech pathologist at the VA hospital and assured Mom that she was great. As she left, Mom felt pretty good about the day and optimistic about getting Dad transferred from the CCH before his acute medical coverage expired in 15 days.
September 17. Yesterday had seemed like such a good day and so full of promise for the coming days. We were ready to build on yesterday’s progress and see Dad transferred to the VA hospital.
During dialysis, Dad had a pretty strong cough. Although he was able to cough up and clear a lot of thick mucus with his Yankauer, he still required periodic suctioning from the nurse and respiratory therapist. The constant suctioning support was a disappointing indication that he was still nowhere near ready to have his trach red-capped. Although Dad needed some Midodrine during dialysis, he didn’t require a vasopressor, so he would still be able to transfer to the VA hospital. Dr. Ciceri thought that Dad’s mental status was pretty good, although he still couldn’t name the president. Dad had not had any fluid removed during dialysis, so he felt a little better than usual when dialysis was over.
Dad’s heart rate became elevated during the day and when Jennifer stopped by for Dad’s physical therapy session, she was told by the nurse that he could have only bed exercises. Mom asked Jennifer if she would come back later during the day for another session. She said that she would see what she could do, but she didn’t return.
The abbreviated physical therapy session wasn’t nearly as disappointing as the visit from Marty. Marty reported that her counterpart at the VA hospital, Tracy, told her that the hospital was on divert status for dialysis beds. This meant that they could not admit another dialysis patient. Until they could, Dad would not be eligible for a transfer. Marty assured Mom that she would continue to check on the diversion status. I didn’t hold out much hope that a dialysis patient would leave the VA hospital within 15 days.